Visualizing Aplastic Anemia
Emma Hall needs a lifesaver, and it has to be an African-American.
So family and friends of the doe-eyed 9-year-old from Olathe are searching for their hero in the Kansas City area on Saturday.
Emma is gravely ill. She has aplastic anemia, a blood disorder. To help her heal, “ethnicity matters,” said Alisa Hall, who describes her daughter as “a little firecracker. The bravest person I know.”
The Halls are asking Kansas Citians — especially black Kansas Citians — to come have their cheek swabbed so that part of their DNA is registered with the National Marrow Donor Program.
A year ago Emma was just a healthy second-grader, playing soccer, taking gymnastics and “flipping all over the place,” her mom said.
“A petite little ball of energy,” with a head full of crazy curly hair, Emma used to spend afternoons after school jumping on her trampoline or playing basketball in the cul-de-sac with her big brothers, Jonah 17, and Jaden, 16, and other neighborhood children.
These days Hall is more likely to find Emma just sitting on the edge of the trampoline chatting with a brother. She’s been in and out of the hospital for months. Her mom, a former educator, took her out of school and is teaching her at home.
Ever since she was diagnosed in December she can barely muster the strength to sit even a few hours drawing chalk pictures on the driveway. It wears her out.
People with aplastic anemia don’t produce enough blood cells, often leaving them feeling tired and more prone to infections or bleeding.
With a bone marrow transplant, stem cells harvested from a donor can be transplanted into a patient’s bloodstream, where they travel to the bone marrow and cause more blood cells to grow.
It was Emma’s mom who first noticed something was wrong with her little girl. The family had been on a church retreat and was packing up to head home. Hall looked at her daughter and noticed “her eyes were yellow. Her skin was yellow, and I thought well that’s not right,” said Hall.
Emma complained her stomach hurt. Turns out Emma had a liver infection and ended up at Children’s Mercy hospital for four days. Doctors could treat the infection, but not before her immune system started attacking her bone marrow.
When doctors told Hall about the aplastic anemia and that her daughter needed a bone marrow transplant, “I was like OK well let’s just fix it,” she said. Hall, her sons and husband Gregg, who is a pastor at LifeMission Church, were ready to donate.
But the Halls, who are white, adopted Emma, who is African-American, at birth in 2010.
When it comes to matching bone marrow, a patient’s ethnic background is important in finding the right donor because markers used in matching are inherited, according to Be the Match which is operated by the National Marrow Donor Program, the largest and most diverse marrow registry in the world.
“Ethnicity does not matter under any other circumstance,” Hall said. “It doesn’t matter in love. But with this it matters.”
African-Americans have a lower registration rate for becoming potential bone marrow and stem cell donors, so they are seriously under-represented in the donor pool, according to the U.S. National Library of Medicine.
Experts speculate that part of the reason African-Americans are reluctant to have their cheek swabbed stems from a distrust because of how black Americans have historically been treated by the health system.
In addition, the genes of African-Amercian patients tend to be more racially mixed than their white counterparts, so finding a match is more complicated.
And a lot of people believe that bone marrow donation is a painful process. Bone marrow donation is done under anesthesia so the procedure is painless.
“It’s like giving blood for a couple hours,” Hall said. Afterward donors have reported side effects including aches, fatigue and bruising, according to the U.S. Department of Health and Human Services. But being a part of the registry is a painless cheek swab.
Hearing about the obstacles makes Hall a little desperate.
“I stop people in the grocery stores and in Walmart. I show them Emma’s picture.” She asks complete strangers to donate a cheek swab. She tells them about the donor drive her friends and family are hosting on Saturday.
“I tell them you may not be Emma’s match, but you can save someone’s life,” said Hall.
The drive is sponsored by DKMS, an international nonprofit that raises awareness about blood disorders and works to find donors.
“I want to see Kansas City rally like we know how to do,” Hall said. “I want every black person in the Kansas City area to show up.”
Hall has faith. “I know God is good, even when the circumstances are not. I trust him,” she said. “I know Kansas City is going to find a match for somebody. I hope it’s Emma.”
In the meantime, she said, Emma may be starting a new therapy soon.
“We haven’t found a match yet and we are running out of time,” Hall said. “It’s getting worse. We need to stop its progression. You can’t live without blood, and she isn’t making any.”
Includes reporting by The Star’s Andy Marso.
Donate a cheek swab to register with the National Marrow Donor Program from 1 to 4 p.m. Saturday, March 23, at LifeMission Church, 2400 N. 81st St. in Kansas City, Kan.